hysterectomy because of endometriosis - Endometriosis Message Board

LiLSqrt75 · 08-22-2005, 06:47 PM

i am 30 years old and had a partial hysterectomy in january of this year because i had endometriosis severely. my doctor actually went in to do a full hysterectomy but decided my ovaries looked good and left them in. now i have 2 cycsts growing on one of my ovaries and the pain is worse than it has ever been before. i am on morphine and percocet daily and i still have breakthrough pain with those. my doctor called me today and wants to put me on DEPO-LUPRON shot for 9 months (which is the match for that medicine) but i already opted not to do that a long time ago because i heard it has severe long term side effects.

has anyone had a hysterectomy due to endometriosis and then still had problems with endo after? what have you done or what does your doctor say.

thanks in advance,

spongebobgamma · 08-23-2005, 01:51 AM

I had a hyst 4 years ago due to endo.. I did the lupron first to get the endo under control before surgery. The lupron worked great for the pain. It put me into menopause but the ********** was worth it. I was terrified of the lupron cause of the horror stories I had read but I was glad I tried it so I knew what to expect after surgery.

My Dr told me estrogen is what feeds the endo so he would not do the hyst without also taking my ovaries. If he left them in the endo would continue to grow. So I did the lupron for 3 months, had the hyst and went without no hrt for 3 more months after hyst. When I was put on the estrogen the endo pain came back...I had to go off the estrogen a total of 2 times for 3-4 months to get the endo under control. Im now using my estrogen patch with no problems, pain has not returned. The endo was difficult to kill but it was done with withholding estrogen.

Another option is excision surgery..it takes a Dr trained in this type of surgery. Instead of just removing the surface endo they will cut deep to get the endo out..You might want to check into this..

Good luck and I hope this helps

LiLSqrt75 · 08-23-2005, 06:23 AM

this is really good info....thank you so much for taking the time to share.

I C Hot · 08-31-2005, 06:22 PM

Quote:

Originally Posted by LiLSqrt75

i am 30 years old and had a partial hysterectomy in january of this year because i had endometriosis severely. my doctor actually went in to do a full hysterectomy but decided my ovaries looked good and left them in. now i have 2 cycsts growing on one of my ovaries and the pain is worse than it has ever been before. i am on morphine and percocet daily and i still have breakthrough pain with those. my doctor called me today and wants to put me on DEPO-LUPRON shot for 9 months (which is the match for that medicine) but i already opted not to do that a long time ago because i heard it has severe long term side effects.

has anyone had a hysterectomy due to endometriosis and then still had problems with endo after? what have you done or what does your doctor say.

thanks in advance,

Hi, This is what I posted on another thread but it directly applies to your question.
I was dx with endometriosis back in 96-97, I had a few years of too much pain. It got to the point that I could hardly walk or get up in the morning. My Dr. tried the pill (didn't work) then said we should try the Lupron for 6 months. So had a shot every month (expensive) and that put me in menopause immediately. That was no fun but survived it. I was mostly out of pain during that time. As the time got closer to when I would normally get another shot I started getting migraine's (never had them before.) My hormones went nuts. Within a month the pain returned. In April 98 I had a hysterectomy but leaving my ovaries. Finally I thought....out of pain. It was a long recovery and with in a few months the pain had returned. Then I did what I should have done from the very begining, I researched. What I found was that many women had the pain return even after surgery. So in further research everything said to give up sugar and white flour. I was at the point that I would try anything. Praise God for that. I don't remember how long it took before noticing the pain getting less, but it did happen (I think it was a few months.) I lost 75 pounds and feel so much better. Years later I still don't have sugar and mostly not any white flour and the pain is still gone. It is so worth giving up the sugar and white flour to be able to live again. Now the ovaries don't want to work anymore so I have hot flashes and night sweats (among other menopause problems.) But this to shall pass (hopefully.)

I hope this info. can help.
Have a great day!

P.S. I really don't regret having the shots for 6 months, it gave me some time without severe pain. When eating sugar and white flour it turns to insulin in your system and somehow keeps your hormones off, allowing the growth of the endometriosis.